O
THE FAMILIES AND FRIENDS OF RSD/PAIN PATIENTS
written
by Keith Orsini
March 2005
(For those of you who don't have
RSD but suffer from any other form of chronic pain (CP) you could
probably substitute your disease everywhere you see the letters RSD
in this article and share it with your families as well)
Dear
Loved Ones;
The other day a friend of mine asked me if I would
share with her loved ones the experience of being an RSD patient;
what we go through on a daily basis, the struggles we face, and the
importance of medications and therapy in our lives. I thought the
best way to do this was to share what a typical day in the life of an
RSD patient was like. I myself have had RSD since 1974, over
thirty years now. I also have Degenerative Disc Disease, Failed Back
Syndrome, Ulnar Nerve Entrapment, and Fibromyalgia so Chronic Pain
(CP) and I are old friends. I first developed RSD when I was 14 years
old. Over the last 30+ years I have talked to tens of thousands of
RSD and other CP patients of all ages and we all experience pretty
much the same things with some minor differences. As an example,
for those who do care but are unsure what a typical day is for us, I
will try to explain. Please don't take this letter as mean-spirited
in any way. I know some of it may be hard to read, to actually see
some of the words in print, but it is not an attack. Your loved ones
just want their voices heard.
Over the years I have
actually had people tell me, "Gee, it must be nice to not have
to work and just sit home all day". If I thought they were
really interested in a reply to that ridiculous statement I would
tell them that having RSD and/or other CP Diseases, however severely
you have it, is much more work than any full-time job! Plus, we don’t
get to call in sick, get vacation days, and our work day is 24 hours
long, 7 days a week! Now understand that quite a few RSD
patients (also known as RSDers) and CP patients have other diseases
as well as RSD, such as Fibromyalgia, Spinal Stenosis etc., and that
some RSDers have RSD in one limb while for others it is more. Some
have less movement while others have quite a bit. Some take only a
few medications and some take quite a lot. I myself take a
little over a total of 20 pills a day (not different ones, but
altogether). Contrary to some people's opinions taking a pile of
medications does not make us ""druggies". A "druggie"
is maybe someone's idea of a person who takes drugs for recreation. A
pain patient is someone who takes medication because he/she has no
choice and who probably cannot fathom someone who takes narcotics for
"fun and/or recreation“!
There are patients who use
different types of machines, have Spinal Column Stimulators, or Pumps
installed in their bodies in an attempt to reduce their pain. Some
deal with the wheelchair issue as well. Most patients, the lucky ones
at least, also do some form of physical therapy such as swimming,
weights, or massage, or walking to help them continue to be able to
do the basics of life and using their hands, feet, and arms.
First,
let‘s start with the sleep patterns, or lack-of-sleep patterns to
be more accurate. Unlike "normal" people, CP patients are
prone to insomnia and do not reach REM sleep; this is the healing
sleep our bodies need each day. We either wake often or are in a drug
induced sleep. When we do wake, it is often physically painful to
actually get up and out of bed. So, why don't we sleep? It is
because RSD cause changes to the Limbic System of the brain. The
limbic system is that part of the brain that controls insomnia,
short-term memory, concentration, irritability, ability to find the
right word when speaking, and much more.
We start our day with
medications of course. The first of many such times per day. To "look
fine" we take 10 to 30 or more pills a day for various symptoms.
Then there are the side effects of those medications to deal with;
upset stomach, drowsiness, diahhrea, constipation, headaches, and
many others. Many of us also have to fight the "Dry-Eye
Syndrome" and must use eye drops two or more times per
day. Understand that these pills do not take all of the pain
away. They just enable us to get up, move around, and have some
semblance of a "normal" life. They simply allow us to
function. Then many of us head to Physical Therapy such as pool
exercise, range of motion therapy, massage therapy, and even
acupuncture. For the patients for whom these things work, they are
lifesavers. Like the medications they allow us to function, to be a
part of our families, to enjoy part of each day, and for some they
actually give us a reason to get up in the morning.
These
aren't luxuries but necessities for those of us who can physically
handle them. There can be month's, even years, when the allodynia is
too high to do even these simple things. (Allodynia is when even the
lightest touches or sounds cause extreme pain.) Maybe the person
sitting next to you at dinner touches your RSD arm, or your foot gets
accidentally kicked at the pew at Church, or your leg gets bumped
into at school; all these things seem harmless to the average person
and they may not understand how they could ever cause pain to an RSD
patient, but trust me, they can and do. Some people can even have a
light breeze cause them excrutiating pain. I know what you are
thinking, “that is crazy”. No. That is RSD. If you think it’s
crazy, and I am telling you from a knowledge background, think how a
patient who knows nothing about the disease feels when they start
forgetting things, especially when their pain is high? Or when the
slightest touch, even the caress of a loved one, the kiss from a
spouse, the touch of the sheet on the foot, the tightness of a sock,
sometimes even the very breeze itself blowing over the body, can
cause such pain to the patient it will bring tears to their eyes.
Think of the confusion and terror that brings into their lives.
And
when their friend and loved ones sit there, make fun of them and
disbelieve them when they try to explain how it causes pain, well,
that hurts them even more. When a disconnected Doctor doesn't believe
you that is bad enough but when a loved one doesn't believe you it
hurts almost as much as the pain. And let me set the record straight
here on the pain, there is no pain like the pain of RSD/CRPS. That
isn't just from a patient or an advocate, it is documented. RSD pain
is ranked higher than any other form of chronic pain known
today.RSD
is ranked on the McGill
Pain Index
as the most painful form of chronic pain existing today!!!
To
put that in perspective, you can visit a page we have on the website
that shows some other diseases/conditions and their rankings. (click
on the link above and scroll down to the index). As you can see
on the scale, Arthritis pain is ranked about a 18, Cancer
pain a 24,
Chronic
Back Pain a 26,
and then CRPS
is ranked a whopping 42!
The only thing close to RSD pain is the amputation of a finger and
that is quick, RSD is 24 hours a day, 7 days a week. Does that
bring it home to you? It is a pain like no other. When people
ask me to describe it to them the best I can do is say “Imagine you
had RSD in your hand and arm. Empty the blood from your blood vessels
in your hand and arm, then refill them with lighter fluid and light
them on fire. Keep them lit 24 hours a day, 7 days a week.” Let
that sink in for a moment. “Now imagine no else can see the
flames or will believe that you are in pain no matter what you
say”. That is what RSD feels like.
Whether we patients
are walking for therapy, which I assure you is as painful as it is
necessary, or doing things that remind us we are alive there is
always a price to pay in extra pain directly afterwards, or even the
next day or week. RSD patients are cognizant of that every day.
While the average person can sit there and tell us "Go ahead and
enjoy the day, you can't let your pain control your life!" What
they don't realize is that we are controlling our pain and not the
other way around. We control our pain by controlling what we do. What
do I mean by doing things to remind us we are alive? When we spend a
few hours tending the garden, spending time with our children,
playing with our pets, going to a movie, grocery shopping, running
errands, attending a family gathering, or even just going to church.
Things that make us feel normal, if only for a few
hours.
Unfortunately some people who see you during these
"good times" believe that is how you are the entire day.
What they don‘t see is the pain you experienced that night and/or
the next day because of what you did. Nor do they take into account
all the medications you took before or afterwards to be able to do
those things nor the fact that you probably had to spend a great deal
more time resting afterwards. The same is true for patients who
go to the computer to get support from others with RSD through
cyberpals, listservs or websites. Many non-patients do not understand
that it is the time we spend there that keeps us going each day . It
informs us of new procedures or medications and educates not only
ourselves but also our loved ones and sometimes even our Doctors
about how to cope/treat RSD. For most of us it is our lifeline,
not our toy. The time we spend on the computer is absolutely
necessary to our general well-being for it is there that we can talk
with others who truly understand what we deal with every day and
every minute.
Many of us have to sneak in a nap in the
afternoon to rest our bodies, especially those of us who also
struggle with Fibromyalgia in
addition to the RSD. One of the problems this leads to is when
our loved ones try to do something nice for us and plan a whole days
activities. It is just too much for us. Because of this disease, you
have to change your whole way of thinking to include doing things in
moderation. For many people that means scheduling things in the
morning when we are at our strongest and our pain is at its
lowest. For others, it is much easier to do something in the
late morning or early afternoon but typically by early evening we are
done for the day. You also have to factor in your physical therapy
and Doctor appointments as sometimes these things will wear us out
for the entire day.
Another
strange symptom that has to be factored into our daily lives is that
many are bothered by vibrations and/or noise, and for a small
percentage, it can actually make the pain skyrocket! A simple ride in
the car over a bumpy road can cause a spike in pain. Due to the
noise and vibrations causing me extra pain, for instance, there are a
lot of things I cannot do, places I cannot go, and again, I am just
one example of many out there. These are places most people take for
granted and may wonder why we are not there. They may think we are
shutting ourselves off by not going, places like my Church, my
Masonic Meetings, going out with friends, etc. If there are a
lot of people making noise for example, even if it is simply singing
or clapping, it can cause our pain to spike. Visits sometimes have to
be cut short due to all the regular noise that is typically
generated, or we just have to go off to another room; and don't even
start on things like thunderstorms, whew!
Imagine saying to
your boss, "Sir, I have to go home, the thunder is causing me
great pain and the strong wind blowing is hurting me as well."
Oh yeah, they would love that. Sorry I can't come to your birthday
party because there will be too many people having fun and enjoying
themselves and making noise. Yeah, that makes sense, especially to my
10 year old niece. I can only imagine the restrictions parents with
kids have to place on their children so as not to hurt their RSD
limbs, after all kids will be kids. I was lucky when I was a
teen with RSD because, despite many a day spent wearing dark glasses
due to the pain of the bright sunlight or the days when the pain of
my RSD made the ordinary things extremely difficult, my friends were
always there. So many teens I talk to on our RSDHope
Teen Corner aren’t
as lucky. They have schoolmates who take pleasure in pushing them in
the hallway to see them fall on their bad leg, or purposefully hit
their RSD arm. Why, even their own siblings hurt them or taunt
them about their RSD, as if it is something they have a choice in.
Who would choose RSD? Do they think if we just decide to smile it
will go away? It would even be a little more understandable if it
were just the kids. Unfortunately it isn’t, as many of you
personally know.
I have heard so many stories from our teens
with RSD/CP whose siblings, Aunts, Uncles, even parents, who tell
them they need to "Just get over it, deal with it, move on
already". Great advice from the uneducated and seemingly
uncaring. Instead of saying things like that, why not read up on the
disease, go to the websites like ours, see what the truth is
regarding using the limbs, talk with the Doctor about it if you
really care that much about their well-being. You don’t know how
much it would mean to the patient if you took just an hour here and
there to do that.
The
bottom line here and the points I have tried to get across are that;
When
you suffer from chronic pain, you have to constantly think about
how, whatever you are going to do that day, will affect your disease
and your pain level.
Being
in chronic pain is a full-time job.
One
with no vacations, terrible benefits, and no way to quit.
RSD
is the most painful form of chronic pain that exists today.
Chronic
pain affects the entire family, not just the patient.
Chronic
pain is an invisible disability. Even other pain patients will
sometimes forget that they
cannot
see YOUR pain and make assumptions based on what they can visibily
see.
A
chronic pain patient may have a good hour or even many good hours a
day where they can "appear normal" to everyone else but
most don't realize the price that is paid before and after.
The
positive
involvement of
their loved ones means the world to the chronic pain patient is
best—if not positive, then no
involvement is
better.
The
patient with chronic pain/RSD may be “medicated” but they are
not stupid and they are not deaf-they can hear every word you say as
you talk about them as if they are not in the room. [Jennifer
Copeland added this].
They
are also aware when they are being discussed when they are not in
their presence. [another Jennifer]
I
am still surprised at the number of fellow pain patients who forget
that not everyone with RSD, and/or other forms of chronic pain, shows
outward signs of it ALL the time so it is understandable when our
loved ones forget. Never assume you know someone else's whole story
at a glance. I spent a few years being stuck in bed unable to
walk. I spent over a year being confined to a wheelchair and having
to learn how to walk again. That was the second time in my life I
have had to do that, despite being told by Drs that I may not ever be
able to walk again. Good thing I am stubborn. I remember one
year where the only time I was able to leave my room was to go to
physical therapy five days a week. I have spent many years having to
use a cane to go even ten feet and despite this, I still have people
who don't know anything about my past struggles, even some who are
fellow RSD patients, email me and tell me I have no idea what it is
like to be stuck in a chair or be unable to walk! That I don't have
it as tough as they do.
I
am blessed in that currently, I am doing better than many other
years. That doesn't mean I am "cured". I take my 15-20
pills a day. I have to do my physical therapy every day. I have to
walk every day. Nearly every afternoon is spent having to lie down
because of exhaustion, partly due to the RSD and partly due to the
Fibromyalgia, in combination with the medications. Evenings, my pain
escalates such that I rarely go out. But I am not complaining. I have
been much worse in my life and I never forget it for a minute. But
NEVER compare your pain to someone else's. It is a lose-lose
situation. It hurts you both. Instead encourage one another and
support your fellow pain patients! We all deal with pain in different
ways and we all have different levels of tolerance
Our
medications, our therapies, and our friends are what get us through
each day. The value of none of these things can be minimized. Not
just for the physiological changes that they bring to our body but
for the psychological ones as well. That doesn't mean our lives end,
they just change. And RSD/CP patients require tools to make those
changes possible. Tools that include medication, various therapies,
exercise, diet changes, and lots of familial support. You can be a
positive part of it or you can be a hindrance, it is totally up to
you.
Now some may view this as being obsessed with the
disease, that we think of nothing else but our disease, our pain,
that we are too focused on it and that is why we are so depressed, so
sad, we hurt so much. Gee, you mean if I didn’t think about it so
much I wouldn’t hurt so much? Hmm, let me give that a try. No,
seriously, the fact is that for us, RSD/CP is a major part of our
life. It has to be factored into every decision we make, if it isn't
we will pay for it later, as will our loved ones. My family and
I often worry that our friends will get tired of our talking about CP
too often. After all, not only have I had it for years but most of
our family is involved in running this organization and getting the
word out about this disease. Many times we have to force ourselves to
take a break from RSD talk for a day. But then we think it is no
different than if we had cancer, MS, or MD, (which some of us have).
People are just used to hearing those words more. Yes, we will lose
friends along the way, that is inevitable But we will also gain some
new wonderfully supportive friends and they will be amazing, true
friends who will be in it for the long haul.
I cannot tell you
all the incredible people from all over the world I have met in our
journey, with whom I have become fast friends. Some I see often and
some I see only at our National Conferences on Pain yet it is as if I
saw them just yesterday; many I talk to only on-line and I know them
best of all. These are amazing people who have overcome obstacles you
wouldn’t believe and yet still come out on top. And you know what?
They could care less that I have RSD. So now that YOU know what
it is all about ... which type of friend are you? I hope this
has helped you better understand a day in the life of an RSD/CP
patient and that you didn't take it as a slap in the face or
something hurled at you but as a teaching tool. Sometimes we have to
be forced to confront things in our lives in a harsh manner in order
to accept that they are real; both the patient and the loved one in
the case of the chronic pain patient. Thanks for listening.
Peace,
Keith Orsini American
RSDHope
On
behalf of Chronic Pain patients everywhere, thank you for taking the
time to read this. It means a great deal to them that you would
take the time to do this and just because they asked
you to read this
does not always mean they feel they have a problem with you
necessarily, they just wanted you to have a better idea about what
they have to deal with. They NEED you in their life; they WANT you
beside them in this struggle. They know they can do it; they can beat
this with YOUR help.
© March/2005-2011
